How can compassionate communities support end of life dementia care?

Research project title - Understanding how networks of community members support end-of-life care for people affected by dementia: A realist evaluation

Lead Investigator: Dr Joseph Sawyer

  • Institution: University College London
  • Grant type: Clinical Training Fellowship 
  • Duration: 36 months
  • Amount: £220, 357.48

Why did we fund this research?

Comments from our Research Network volunteers:

I found this to be a forward-looking proposal which encourages openness in relation to dementia in the wider community. It is about moving forward together - suggesting using resources not utilised well at the minute.

Project summary

The researchers will investigate how communities support people affected by dementia towards the end-of-life and understanding the challenges they face in doing this. They will explore how outcomes can be improved for people affected by dementia through the community support approach.

The background 

The journey through to the end-of-life can be difficult for people affected by dementia, particularly when it is hard to access professional support.

People often rely on their own resources, for example family, friends and other community members, which can be isolating and overwhelming. This can also lead to considerable distress which may  affect the physical health of those around them.

Compassionate communities have been shown to improve end-of-life care for people with cancer but there is no research on this for people with dementia. 

What does this project involve?

Dr Sawyer wants to find out how communities support people with dementia towards the end of life and the challenges they face in doing this.

This could shed light on how communities can improve end of life care for people with dementia.

To do this, the team will:

  • Understand how communities support people affected by dementia at the end of life and where this isn't happy, why.
  • Investigate how social networks change when someone with dementia is at the end of life.
  • Observe how relationships between people with dementia and care givers change in different settings.
  • Lastly, interview people carers to listen to their experiences.

How will this project help people with dementia?

This research will help Dr Sawyer gain an in depth understanding of the role of communities in end of life care.

The team can them go on to consider designing interventions that support communities and improve end of life care. 

Ultimately improving and promoting community care giving could help to reduce stigma and social isolation for people affected by dementia.

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